This holiday season, many families will get the chance to dive into their genetic history through at-home DNA kits, but Sen. Chuck Schumer is warning that such kits may put your privacy at risk.
DNA kits like AncestryDNA and 23andMe were top sellers on Amazon this Cyber Monday and have seen thousands of sales on the retail site in the past two years.
Ancestry’s sales swelled to nearly 1,300 kits a day on Amazon by late 2016, the company told CNBC, and the kits are expected to be a popular gift for the holidays.
The kits make it easy to see your genetic lineage, but those getting their DNA tested aren’t the only ones to see all that information.
Schumer this week said that at-home DNA testing puts consumer privacy at “great risk,” because the companies conducting that testing don’t always disclose to their customers exactly what they are doing with your DNA. He’s calling for a Federal Trade Commission investigation into the privacy policies of such kits.
"When it comes to protecting consumers’ privacy from at-home DNA test kit services, the federal government is behind,” Schumer said in a statement. “Besides, putting your most personal genetic information in the hands of third parties for their exclusive use raises a lot of concerns, from the potential for discrimination by employers all the way to health insurance.”
Most companies that offer DNA testing, from the family-history focused ones to businesses that offer personalized weight loss tips based on your genes, don’t actually do the genome sequencing themselves.
They rely on a third-party genome sequencer, like the Silicon Valley-based Helix. All the companies that work with Helix in their “marketplace” can draw from that one DNA sample, so you don’t have to send your DNA in again to try different genetic-based services.
Many people don’t realize their DNA, and all the sensitive information it contains, are ending up in the hands of third-party companies, Schumer said. Varying Terms of Service for each of those companies means it’s hard for consumers to understand the “consent” they’re giving for the use of that information.
“That's why I am asking the Federal Trade Commission to take a serious look at this relatively new kind of service and ensure that these companies have clear, fair privacy policies and standards for all kinds of at-home DNA test kits,” Schumer said. “We don't want to impede research but we also don't want to empower those looking to make a fast buck or an unfair judgment off your genetic information. We can find the right balance here, and we must.”
Interest in DNA testing shows no sign of slowing down. The market was worth about $70 million in 2015, according to data gathered by Schumer’s office, and is expected to rise to $340 million by 2022.
“The last gift any of us want to give away this holiday seasons is our most personal and sensitive information, so that is why we are asking the FTC to step in, take a hard look at this industry and ensure there are across-the-board protections to safeguard consumers and ensure good research continues,” Schumer said. “There is no point to learning about your family tree if your privacy gets chopped down in the process.”